Dan Schweitzer was lured to Central Oregon by his musician friends 15 years ago. Despite six back operations and persistent pain in his leg, the Vietnam veteran had found a combination of pain medicine that allowed him to live a fairly normal life, to cook and clean, do a little gardening and play music part time.
But two years ago, the local Veterans Affairs clinic managing his care sent Schweitzer to a pain specialist, who proceeded to cut his pain medication doses by more than two-thirds.
“He immediately removed a large portion of the opiates and literally crippled me,” Schweitzer said.
In short order, Schweitzer, who is 6-foot-2, dropped from 210 pounds to 143. He struggled to deal with the household chores and his home fell into disrepair. He was the sole caregiver for his wife, Dorothy, who was bedridden with chronic obstructive pulmonary disorder, until she died in June. His piano and guitar stood silent.
“I had to leave the VA and find a local doctor that was willing to provide at least enough that I could function, more or less,” he said. “But I'm still having a lot of trouble because it's still not enough opiates to function well.”
Schweitzer is one of an estimated 50 million Americans who suffer from chronic pain. And although effective medications and treatments exist, a staggering number of those patients are having trouble getting the help they need. Faced with increased pressure from law enforcement agencies eager to root out drug abuse and diversion of prescription drugs to others, many doctors are thinking twice about whether to prescribe opiates to patients. That has left many patients complaining they're being treated like criminals or drug addicts, having to prove their innocence in order to get needed treatment.
“People with pain are the only patients who are routinely abused in this fashion, simply because the one medication that can really help, and sometimes even cure our condition, is politically useful as a demonized substance,” Schweitzer said. “I feel that I have suddenly, without trial or sentencing, been relegated to the status of an untrustworthy, lying criminal on the basis of nothing but the facts of my pain and needing treatment for it.”
Doctors were once reluctant to prescribe opiate medications for any type of pain. These powerful drugs, derived from the same poppy plant as opium or heroin, were considered too addictive to prescribe. Opioids include natural and synthetic drugs that act in the same way as opiates. Even terminal cancer patients in severe pain often went without these medications.
That changed in the 1980s when the World Health Organization called attention to the undertreatment of pain. Doctors were urged to consider pain as the “fifth vital sign,” as important a symptom as blood pressure or pulse.
The increased focus on treating pain opened the door for the use of opioids for all sorts of severe and chronic pain.
According to Dr. Richard Denisco, a medical officer with the National Institute on Drug Abuse, that was about the same time that the drug Oxycontin hit the market. The drug was heavily marketed by its manufacturer, Purdue Pharma, which eventually settled charges of inappropriate marketing.
The drug was an extended-release form of the medication oxycodone. But when an Oxycontin pill is broken or crushed it releases the entire 12-hour dose over a very short period of time.
“That's what made it so addictive and dangerous. If the oxycodone was in a different matrix, all this might not have happened,” Denisco said. “Oxycontin really moved the field in different ways.”
With heavy marketing, the supply of Oxycontin was sky high, as was the demand for the pills. Soon the World Health Organization was calling for balance in prescribing opioids. In 2008, the Substance Abuse and Mental Health Services Administration reported that 6.2 million Americans older than 12 were using prescription drugs for non-medical purposes. And according to the International Narcotics Control Board, with the exception of marijuana, the abuse of prescription drugs has surpassed all other illegal drugs.
Congress began to pressure the Drug Enforcement Agency to do something about it.
“But the genie was out of the bottle. The problem is out there, and it still exists,” Denisco said. “Now what's happening is we're swinging back toward the balance, the middle line, but we're probably not quite there yet.”
Chronic pain patients and their advocates, however, argue the pendulum has swung too far. Efforts to close down “pill mills” and prosecute doctors who overprescribe opioid drugs have had a chilling effect on doctors' willingness to write prescriptions for controlled medications.
“Health care providers are not used to playing the policeman, or to figuring out who's good and who's bad,” said Kathy Hahn, a pharmacist with BiMart in Springfield and chairwoman of Oregon's Pain Management Commission. “A lot of docs are just saying, ‘I don't have time to do this. This is beyond my time limitations.' It's becoming a fairly large liability risk.”
Hahn said the pain commission has been working for eight years to increase access to pain medications for those who need it but that access remains “horrid.”
“We've done mandatory education (of physicians), we've changed policy in the state, we've done everything we can, but it comes down to the risk that's out there in trying to figure out how to provide appropriate pain management without causing increased diversion, abuse or injury,” she said. “It's actually getting much worse.”
Hahn is currently involved in a case brought against Kelly Bell, a nurse practitioner with the Payette Clinic in Vancouver, Wash. Bell became the target of a DEA investigation and a wrongful death lawsuit earlier this year, when she wrote a prescription for Oxycontin that was eventually sold to an 18-year-old Multnomah County woman. The woman smoked the drug and died of an overdose. The clinic agreed to stop prescribing narcotics pending an investigation into whether staffers were prescribing inappropriate doses.
Meanwhile hundreds of the clinic's chronic pain patients have been flooding area hospitals and clinics seeking to refill their prescriptions. The case underscores the difficulties involved in appropriate prescribing.
On the one hand, health authorities in Washington state have said the high doses prescribed to many of the clinic's patients suggest drug addiction. Yet, scores of Payette's regulars are hailing Bell as a compassionate provider, one of the few medical professionals willing to treat their pain.
Critics point to the high number of pills prescribed to patients as proof the clinic is simply a pill mill, while supporters argue the clinic attracts large numbers of patients with severe chronic pain because they're not getting help elsewhere.
The ambiguity of the numbers and actions surrounding narcotics makes controlling appropriate access a veritable minefield for physicians and patients. The same set of circumstances could just as easily suggest drug abuse as undertreatment.
“There's a problem called pseudoaddiction, where the person acts as if they're an addict, but they're really undertreated,” Denisco, the NIDA doctor, said. “They do all those behaviors (suggesting a drug problem) but in fact they're really just trying to get adequate pain medicine.”
Undertreated patients may moan or exhibit other physical behaviors that mimic addiction. They may watch the clock intently or make repeated requests for medication before their next scheduled dose. Pain requests can seem excessive based on the circumstances.
“That is exactly what makes this a difficult problem,” he said.
Patients with undertreated pain, meanwhile, wind up learning just how hard they can push for more medicine before doctors become suspicious.
“Pain patients tend to be careful. As soon as the doctor shows resistance, ‘I don't know if I want to raise that dose,' the pain patient generally shuts up,” Schweitzer said. “Pushing can just get you fired as a patient, and then you're back to trying to find help. Usually you end up going from ER to ER to ER until you find someone.”
Such behavior, known as doctor shopping, can quickly get a patient labeled as a drug seeker. One month, Schweitzer's shipment of pain medications from the VA pharmacy arrived incomplete. Calls to his doctor and his pharmacy to get a replacement were met with resistance and probably looked like nothing more than typical drug-seeking behavior. His doctor told him to go to the ER if he needed more medication.
Dr. William Reed, an emergency room physician at St. Charles Bend, said ER doctors face the same concerns but are somewhat insulated because they prescribe fairly short durations of pain medications. While they have to be careful not to contribute to drug-seeking behavior, their primary goals are to get the patient stabilized and then to a doctor who can manage the patient's long-term needs.
“(Patients) always get the benefit of the doubt,” he said. “(Because) if you're wrong and they are not abusing, then you're subjecting one of your fellow human beings to pain when they don't need to have it. Do people actually sneak one past us? Absolutely. And that's probably appropriate because you don't want to miss the ones that really need it.”
Reed said there are few monitoring tools that can help emergency room doctors quickly identify when patients are getting large numbers of drugs by visiting different hospitals and clinics. A recent switch to a new electronic medical record system has actually hindered the ability of doctors at the hospital to see whether the same patient just got a prescription in Redmond or Prineville. And without a regional EMR, there is no way to tell if a patient has recently received a prescription from a doctor outside the hospital system.
Some pharmacy benefit managers now send doctors a letter when their records show patients are filling multiple prescriptions, but such data are available only well after the patient has left the ER with prescription in hand. Oregon legislators passed a bill establishing a statewide prescription monitoring program but that won't be implemented until the summer of 2010 at the earliest.
“Sometimes we have to do that because we just don't know or we don't have the time to get into it in the hectic environment of the ER and research it,” Reed said.
In nonemergency settings, doctors are increasingly taking precautions to protect against drug abuse or diversion. Doctors at The Center: Orthopedic & Neurosurgical Care & Research in Bend will no longer refill prescriptions by phone after hours or on weekends, when it's harder to determine the legitimacy of the need.
“Sometimes people are legitimately calling us, but we just had to draw a hard line because we were getting so many calls from people trying to manipulate us,” said Dr. Knute Buehler, an orthopedic surgeon with The Center.
It's also an easier call for surgeons who generally know how much pain medication a patient will need after a surgery and for how long. Primary care physicians and pain specialists are more likely to face the dilemmas involved in long-term opioid therapy.
Earlier this month, a panel of pain experts issued a report calling for an increased emphasis on pain management, including improved education for physicians on pain management strategies.
Dr. Russell Portenoy, co-chair of the panel and chairman of pain medicine and palliative care at the Beth Israel Medical Center in New York, said the burden often falls on the primary care providers, who are given neither the time nor the resources needed to adequately manage chronic pain.
“You have 15 minutes to see someone who has hypertension and other chronic conditions, and has chronic pain,” he said at a press conference releasing the report. “In 15 minutes you don't have time to hear the story and you're going to treat what you know how to treat and is easy — changing the medication for hypertension.”
But Portenoy also acknowledged that the laws and regulations surrounding controlled narcotics sometimes prevent good medical care.
“Sometimes the perception that physicians have that they are at personal risk by prescribing a controlled prescription drug may be a barrier to a physician prescribing these drugs when appropriate,” he said. “The concept of balance is still new, and it's not broadly understood in the context of primary care.”
Portenoy was one of the experts that testified in support of Dr. William Hurwitz, a Virginia-based physician who was convicted for drug trafficking in 2007 after some of his patients resold the opioids he prescribed. Hurwitz was sentenced to four years, nine months in prison and was released earlier this year.
Such risks to physicians are why Schweitzer never uses the name of the Central Oregon physician who is currently treating him or the specialist in Southern Oregon he hopes may increase his pain meds.
“Doctors that get publicity because they're correctly managing pain, especially single (independent) doctors or older doctors, become targets for the DEA,” he said. “And very few pain patients will share the names of their doctors, because shortly thereafter, they will be descended upon by thousands of chronic pain patients desperate for help.”
Even though his current doctor isn't prescribing the level of medication he would like, Schweitzer knows he's done more for him than anyone else so far and most likely saved his life.
“My wife and I were considering suicide before I found this doctor,” he said. “We were probably about a week away. We were laying there watching each other deteriorate and unable to do much of anything. The house was falling down around us. It stank. I couldn't do laundry. Pain like that is physically and emotionally exhausting.”
His level of medication was so low, he couldn't function if he took it as prescribed. There were months when he would take his entire supply of pain medication in the first week, giving him seven days of adequate functioning to get things done, followed by three weeks of incapacity until his next shipment arrived.
Now with the morphine his new doctor has prescribed, days are manageable as long as he doesn't move around too much. Alone at home, he doesn't play his music much anymore. He generally rests to save up his energy for his ongoing pursuit of better treatment.
“I no longer turn in my sleep,” he said. “The pain wakes me up, and I've apparently learned not to move when I'm sleeping.”